Of goldilocks and neonatal hypernatremia

A heart-wrenching story has been circulating on social media about an exclusively breastfed baby who suffered brain damage after 4 days of ineffective feeding. The mother, Dr. Christie del Castillo-Heygi, is a physician, and she shares how she was reassured that all mothers can make milk, and did not realize until she engaged a lactation consultant at 96 hours postpartum that her child was profoundly dehydrated.

It’s a tragic story. Dr. del Castillo-Heygi is petitioning public health leaders to warn all parents about the risk of irreversible brain damage with exclusive breastfeeding. That warning would directly challenge efforts across the US, and around the world, to emphasize the value of exclusive breastfeeding and the risks of unnecessary supplemental feeding. This push for exclusive breastfeeding is part of efforts to implement the Baby Friendly Hospital Initiative, a set of quality improvement efforts that increase the likelihood that women achieve their personal breastfeeding goals. For healthy infants, supplementation can interrupt the demand-drives-supply physiology of breastfeeding, reduce a mother’s milk supply, confuse baby’s latch, and expose the infant’s gut to allergens that may impact lifelong health.

So who’s right? Well, it’s complicated – and my sense is that this debate reflects the challenges of ensuring that families have the knowledge and support they need to initiate and sustain breastfeeding in the early weeks after birth.

That’s why the American Academy of Pediatrics recommends that all breastfed newborns be monitored for weight loss, and all breastfed babies be seen for a weight check at 3 to 5 days of life. Several UK studies have found that routine weight checks at 2-3, 5 and 10 days of life identify babies at risk and reduce the severity of dehydration. We need to hold health systems accountable for ensuring that these visits happen, whether in outpatient clinics, through home visits, or in newborn follow-up centers at maternity hospitals.

Primary lactation failure is real, and if it is unrecognized, it can lead to adverse outcomes. An emphasis on exclusive lactation without adherence to recommended post-discharge follow-up in the community is a set up for bad outcomes.

How often do those outcomes happen? Several studies have tried to measure how frequently exclusively breastfed babies get into trouble from insufficient milk transfer. Severe hypernatremia, defined as a sodium > 160 mEq/L, appears to be quite rare: A UK population-based study measured rates of severe hypernatremia among newborns, and found that 7 babies per 100,000 were affected. None of the 62 infants with severe hypernatremia had long-term complications. More moderate sodium elevations, to levels higher than 150 mEq/L, occur in between .03% and 2.77% of infants (see Table); combining reports in the published literature from the UK, Italy and Switzerland , 1 in 1000 healthy babies is affected. The major exceptions were two studies conducted in Turkey. In the more alarming study, 14% of babies developed an elevated sodium level; of note, mothers and babies were routinely sent home within 24 hours of birth, well before breastfeeding could be established.

Excessive weight loss, defined in one prospective study at >10% of birth weight by day 3 in conjunction with the mother not feeling that her breasts were fuller by 72 hours, is far more common, affecting 19% of women in a cohort of first-time mothers. If one in five babies experience excessive weight loss, then those of us providing breastfeeding education and support need to choose our words carefully. Statements like “all mothers can make enough milk for their babies,” like, “All mothers can birth vaginally,” sound empowering, but they are not true. We have to watch our language. Just as there is an appropriate c-section rate, there is an appropriate supplementation rate. We’re not aiming for 100% exclusive breastfeeding. We are aiming for using supplementation judiciously, when indicated.

With that in mind, we need to be thoughtful when we share information about the side-effects of supplementation. Teaching that “just one bottle” alters baby’s gut for weeks can be a powerful deterrent, dissuading a family from supplementing a thriving baby, but those same warnings, rigidly adhered to, can lead a mother to keep offering the breast to a baby who’s struggling because “formula is bad.” Perhaps we need to talk about formula the way we talk about antibiotics. For a bacterial pneumonia, antibiotics can be life saving; for the common cold, they can give you a nasty yeast infection, without any relief from the coughing and sneezing. Such thoughtful guidance becomes particularly important for dyads at high risk of delayed onset of lactogenesis.

This is especially tricky in the face of relentless marketing of infant formula. Free samples, seductive advertising campaigns, and pseudo-empowerment messaging to mothers muddy the waters and make it incredibly complicated to parse “medically indicated supplementation” from “formula-marketing-driven supplementation.”

We also know that breastfeeding is a confidence game – pain and anxiety reduce milk let down, and a barrage of test weights and warning sign tutorials could derail normal feeding for a substantial proportion of women. We need to develop tools for counseling families that strike a balance between reassurance and vigilance for adequate infant intake in the first few days after discharge. Too much counting of diapers and poops could lead to excessive supplementation; too much “all moms can do it!” messaging could blind families to signs that baby is in trouble.

We also need to find ways to identify at-risk kids before discharge, ideally for home-visit follow-up. Several authors have identified risk factors, including first-time mothers, birth by c-section, and breastfeeding problems in the hospital, that could be used to prioritize who is at risk. The Academy of Breastfeeding Medicine has a page-long list of risk factors. The ideal might be an electronic-medical-record-generated “Red, yellow, green” feeding assessment that would identify at-risk babies based on mom and baby history, gestational age, birthweight, weight trajectory in hospital, and feedings observed by a qualified lactation professional. “Red zone” babies would get discharge teaching that emphasized vigilance, and green-zone babies would get discharge teaching that emphasized reassurance. Researcher Valerie Flahermann has done formative work in this area with her NEWT nomogram, which provides hour-by-hour guidelines for infant weight loss for infants born vaginally or by c-section. What’s not known is how to best incorporate this tool into practice and share the information with families, so that we strike that balance between vigilance and reassurance.

My sense is that every day, experienced, thoughtful pediatric providers are routinely making clinical judgements about which kids are at risk and need close follow-up. As hospitals adjust their practices to support exclusive breastfeeding, we need to figure out how to share this “Spidey-sense” with providers who have trained and practiced in settings where formula use was the norm.

What, then, of the tragic stories of brain-damaged babies? Wouldn’t it be easier to supplement all babies, rather than redesign our systems of care to identify dyads at risk and ensure early follow-up for every baby?

It’s here that we have to think about numbers needed to treat, and numbers needed to harm. If we go with the estimate that 1 in 1000 babies develop an elevated sodium level, we would have to supplement 1000 healthy kids to avert one case of hypernatremia. If we use the UK numbers for severe hypernatremia, we’re looking at 100,000/7, or 14,285 healthy babies being supplemented, to prevent one affected baby. Multiple pediatric health conditions, including ear infections, hospital admissions for lower respiratory tract infections, gastrointestinal illness, and sudden infant death syndrome, are more common in infants who are not breastfed exclusively. How many cases of these conditions might we cause with routine supplementation to prevent a hospitalization for hypernatremia?

Given these unknowns, it seems prudent to instead reevaluate the way we deliver care to ensure the safety of dyads at risk, while simultaneously supporting dyads who are succeeding. We need to hear from families who have experienced these tragic events to identify the gaps that prevented them from getting recommended care, and we need to develop a multifaceted approach that’s neither too vigilant nor too reassuring. Like Goldilocks, we need an approach for each family that is just right.

Alison Stuebe, MD, MSc, is a maternal-fetal medicine physician and breastfeeding researcher. She is an associate professor of Obstetrics and Gynecology at the University of North Carolina School of Medicine and Distinguished Scholar of Infant and Young Child Feeding at the Gillings School of Global Public Health. You can follow her on Twitter at @astuebe.

Posts on this blog reflect the opinions of individual ABM members, not the organization as a whole.

This post was updated on 2/1/2016 to include Dr. Christie del Castillo-Heygi’s name and a link to her story. She writes:

My son was born 8 pounds and 11 ounces and had lost 1 pound 5 ounces at day 3 of life, about 15% from birth weight. At the time, we were not aware of and were not told the percentage lost, and having been up all night long trying to feed a hungry baby, we were too exhausted to figure out that this was an incredible amount of weight loss. Our pediatrician told us that we had the option of either feeding formula or waiting for my milk to come in at day 4 or 5 of life. (Emphasis mine.)

As noted in my comment below, it is troubling that a 15% weight loss was documented by a pediatrician without an immediate evaluation of feeding or recommendation for supplementation.

Perhaps informing mothers truthfully of the common risk of starvation-related complications and the risk to their babies brains would better than more lactation consultants. What did we do before lactation consultants? We listened to our babies and used our brains to feed them, not just our breasts.

No, we reflexively formula fed. There was no support for breastfeeding. Not suggesting relentless, overzealous determination to breastfeed against all odds, but fyour argument should help to reach a happy middle ground. You raise some valid issues, and we should be happy for the dialogue.

I think the estimates of number needed to treat and number needed to harm are a bit off. First, about 2% of exclusively breastfed babies in the USA are readmitted to the hospital for complications of insufficient intake. (Some have hypernatremia, some do not.) Most of them don’t suffer permanent brain damage, but still, 2% is a pretty significant number.

Second, we don’t necessarily have to supplement every baby to prevent the vast majority of them. We do need to change guidelines and practices and supplement earlier, based on things like excessive weight loss or other signs of insufficient intake, rather than waiting for signs of emergency such as lack of wet diapers.

Third, there’s really no evidence that supplementing with a small amount of formula during the first few days of life interferes with the health benefits of breastfeeding. Allowing breastfeeding problems to turn into emergencies, however, is a great way to destroy the nursing relationship permanently, in addition to putting the baby at risk of harm.

Supplementing, especially in the newborn, should not be considered a last resort, a sign that breastfeeding is failing, or a form of “giving up.” It should be given to the baby as needed without judgement, because baby’s health comes first.

Brooke, if you are referring to this study: http://pediatrics.aappublications.org/content/116/3/e343 the denominator for the 2% figure is not “all breastfed babies in the US”, it is “all admissions of term and near term babies <29 days old to Children's Hospital of Pittsburgh". (It's also much higher than the numbers cited by other surveys above, where the denominator is simply "all babies".)

I agree that there are cases where we need to supplement earlier. I sometimes see clinicians interpret "supporting breastfeeding" as just not supplementing, instead of referring to skilled lactation care to help assess whether supplementing is really needed. Supplementation, where indicated and with support, is not failure or giving up. Where I become frustrated is when supplementation is seen as the solution to a breastfeeding problem. It solves the immediate and supremely important issue of infant intake, but it doesn't fix anything in the long term about why there was insufficient intake in the first place, and long-term formula supplementation with no guidance does have a strong chance of leading to breastfeeding failure.

Having trouble replying specifically to your comment below, but in any case again (as you note) the denominator is not exclusively breastfed babies, it is all babies readmitted to the hospital.

I think a study asking how many infants who were discharged exclusively breastfeeding are readmitted for feeding related issues would be really educational/beneficial to identify which babies should be targeted for additional support. At the birth center where I am the lactation services coordinator, we had two lactation students pull all our charts for 6 months and gather information about babies who were not back to birth weight at their 2 week visits. As a result of that chart review, we have implemented more safeguards to identify mothers/babies at risk of breastfeeding difficulties and bring them in for LC visits between their home visit and the 2 week. Pulling information like this is really valuable for organizations if they have the time and resources.

Our admissions for dehydration/jaundice were already very rare, I believe in part because of home visits from RNs in the first days aft birth, and prompt supplementation with donor milk or formula if a need is identified. None of this involves routine supplementation for all babies – in fact our exclusive breastfeeding rates are very high. It’s having guidelines and staff training around what are yellow and red flags indicating a need for supplementation, and having close follow up with patients. I saw the note that the baby in question had lost 15% of birth weight and was told by the pediatrician that they could just wait for the milk to come in. Our providers would, and have, sent a baby with such excessive weight loss and dehydration to the ER. As someone noted below, it’s unfortunate that pediatric providers get so little training in normal infant feeding – with the right practices in place, tragedies like this don’t have to happen.

The current estimates on hospital readmission for feeding complications is 1-6%. I apologize, I looked overlooked the denominator. I will retract that 1.9% hypernatremia rate for ALL babies. But there are more complications associated with EBF before lactogenesis than hypernatremia. Hyperbilirubinemia is by far the more common complication. 1-2% readmission rate is fairly accurate and goes higher the more women exclusively breastfeed at discharge because you cannot change the fact the 10-25% of them will not be able to keep their child from losing greater than 10%. Hypernatremia in fact starts to occur at 7% weight loss on average.

Please have a look at the FIB Foundation facebook/internet site. I worry that there are so many inaccuracies that it is tantamount to scaremongering. I have no medical qualifications at all, but I have breastfed 3 children and have some awareness of the problems encountered by new mums. I find the FIB page based upon a personal experience and non-applicable to most normal healthy new mums and babies, yet it is something that many will use to “educate” themselves.. Is there anyone that can regulate this?

Do you realize that they will cannot tell mothers that my site is inaccurate because the site accurately describes what happens to babies who are underfed by the BFHI every single day, which includes 1 in 10 babies who are hospitalized for phototherapy, 1 in 10 that develop hypoglycemia and 10-18% that they describe as developing “starvation jaundice” on their own jaundice protocol? They have attorneys who likely tell them to not engage with me because of the babies they have hospitalized with their guidelines while hiding the complications associated with their guidelines. Good luck finding someone to silence the Fed is Best Foundation. You can’t censor the truth. Ask any neonatologist. Newborn starvation happens every single day.

In the past twenty years I have seen only one baby with hypernatremic dehydration. The mother did not make an appointment until the baby was 10 days old. The infant was admitted to the hospital and she did well with no permanent problems. I practice in Southern California and the majority of our hospitals are designated BFH and each hospital has a breastfeeding clinic. I also see all my newborns 2-3 days after discharge and evaluate them for weight loss, jaundice and tight frenulum. The mom who is circulating the letter about her newborn with hypoglycemia and subsequent autism is quite wrong. I believe that autism is the result of formula feeding and not alleged hypoglycemia. See the association of early weaning and formula feeding with autism spectrum disorders, Breastfeeding Medicine October 2014.

Really? Because my son had hypernatremic dehydration at 4 days old, less than 24 hours after hospital discharge. He also had severe jaundice. After readmission, the NICU staff acted like his condition was not at all extraordinary.

How can you be sure you aren’t missing cases, if you believe it’s so rare? How often do you need to send a baby back to the hospital? And the fact that a pediatrician believes formula causes autism frightens me so much I feel sick.

I’m a physician and have seen it far more often. It even happened to 2 of my colleagues: both of their babies were admitted with hypernatremic dehydration despite the fact that they are well-trained physicians. The original story, which Dr. Stuebe inexplicably does not link to, also occurred in the infant of a physician mother. The fact that this can occur in even the most privileged should be a warning to us all. The truth is that a baby can become dangerously dehydrated very rapidly if a mother’s milk is at all delayed. And by that time, a mother has been discharged and may be out of her mind with sleep deprivation.

The fact that hypernatremic dehydration readmission is rare in the UK is no surprise to anyone who is familiar with their culture. The medical system may push exclusive breastfeeding, but the truth is that most mothers there still supplement early. They are made to feel guilty, but it looks like it actually works to keep babies out of trouble.

remember there are 2 different people involved, the mom (and availability of enough milk or not) and the baby (and baby’s ability to feed well enough to get the available milk or not). The underlying issue could be as simple as technique, or issues with mom baby or combination of both. If any doubt about baby getting enough intake, have mom start hand expressing or pumping asap (can provide the milk needed… or realize not enough milk may be (or partly be, or temporarily be) the problem- which could be a mom issue or a baby not feeding well so didn’t order the milk issue or both). Beyond the first day or so (sooner for LBW, Late PreTerm, C+ or otherwise high risk babies) the baby no longer has reserves and feed the baby (breast, expressed breast milk, and formula if needed) has to be the top priority, while working on the underlying issues with milk supply and breast feeding. (otherwise the baby gets into trouble and the moms milk supply will be further sabotaged) Hospitals should have guidelines and know the guidelines by AAP, Family Practice, and/ or Academy of Breast feeding Medicine guidelines to provide care and education and support to these families. ND, RN, etc doesn’t equal a knowledgeable parent, in fact many times the opposite is true and there is a disconnect between what they know in practice and the 24/7 in the trenches with your own child. They should be treated as the new parents they are, anything less is a dis-service to them.

The relationship between breastfeeding and autism needs another look. It is beyond dispute that human milk contains developmental toxins. According to the Oregon Department of Environmental Quality, according to studies published as of its 2010 report, PCBs have been found to be present in human milk in doses 63 to 270 times the minimal risk level established by the U.S. Agency for Toxic Substances and Disease Registry.< Oregon Department of Environmental Quality Environmental Cleanup Program, Oct. 2010, 10-LQ-023, p. D2-4 (near very end) at http://www.deq.state.or.us/lq/pubs/docs/cu/HumanHealthRiskAssessmentGuidance.pdf

A study that investigated data from all 50 U.S. states and 51 U.S. counties found that "exclusive breast-feeding shows a direct epidemiological relationship to autism," and also, "the longer the duration of exclusive breast-feeding, the greater the correlation with autism." Shamberger, R.J., Autism rates associated with nutrition and the WIC program, J Am Coll Nutr. 2011 Oct;30(5):348-53. Abstract at http://www.ncbi.nlm.nih.gov/pubmed/22081621
In a 2011 Canadian study, with data from over 126,000 children, a 25%-higher autism rate was found among children who were breastfed as of discharge from the hospital than among non-breastfed children. Dodds et al., The Role of Prenatal, Obstetric and Neonatal Factors in the Development of Autism, J Autism Dev Disord (2011) 41:891–902 DOI 10.1007/s10803-010-1114-8, Table 6, at http://autism.medicine.dal.ca/research/documents/2011DoddsetalJAutDevDisord.pdf
In a study in Kentucky, 37% of autism cases had received 6 months of breastfeeding, compared with 13% of the controls; the p-value was .003. Breastfeeding and Autism P. G. Williams, MD, Pediatrics, University of Louisville, and L. L. Sears, MD, presented at International Meeting for Autism Research, May 22, 2010, Philadelphia Marriot https://imfar.confex.com/imfar/2010/webprogram/Paper6362.html)

To say the formula causes autism shows a fundamental lack of understanding of medicine and science. Formula is food and for starving child common to exclusively breastfed babies in the first day of life, formula is life- and brain-saving. The following article shows the among 100 children with seizure disorders, the most common cause of their seizure disorder was neonatal hypoglycemia from poor feeding. 57% of children with neonatal hypoglycemia and diagnosed seizure disorder developed autism. Neonatal hypoglycemic brain injury and diffuse brain ischemic is a much more plausible cause of autism than formula. http://www.ncbi.nlm.nih.gov/m/pubmed/19242029/?i=12&from=hypoglycemia%20and%20autism

Neonatal hypoglycemic brain – injury a common cause of infantile onset remote symptomatic epilepsy.
Udani V, et al. Indian Pediatr. 2009.
Show full citation
Abstract
OBJECTIVES: To study the etiology of remote symptomatic epilepsy with onset in the first 3 years of life. Patients with neonatal hypoglycemic brain injury (NHBI), were further studied for risk factors and clinical features.

METHODS: The study was conducted at a tertiary pediatric neurology service between May-August 2004. Consecutive patients were recruited prospectively. The probable etiological diagnoses were based primarily on cranial imaging. Two radiologists, blinded to the etiological diagnosis, reviewed the cranial imaging and suggested the likely etiology based on published imaging criteria. There were three categories i.e, (i) perinatal encephaloclastic conditions (PEC) e.g., hypoxic ischemic encephalopathy (HIE) etc, (ii) developmental (DV) e.g., tuberous sclerosis, etc and (iii) postnatal (PN) e.g., trauma, etc. Three risk factors (birth weight, type of delivery, feeding difficulty) were compared between NHBI and developmental etiology (DV) groups. Neurological findings were compared between the NHBI vs the other perinatal groups. Seizure details were studied only in the NHBI group.

RESULTS: 63 boys and 37 girls were recruited. Mean age of seizure onset was 13.9 months. PEC were seen in 50 patients, DV in 28 patients and PN in 5. NHBI was seen in 23 patients and was the most frequent cause of epilepsy. Low birth weight (LBW), neonatal feeding difficulties and cesarean delivery were significant risk factors for NHBI vis a vis the DV group. Microcephaly, autism, visual impairment and apraxia of hand use were common while spasticity or dystronia were rare in NHBI. Spasms were the commonest seizure type.

I’m sorry to disagree with you, but autism is NOT caused from formula feeding. Just as many breastfed babies are diagnosed with autism as well as formula babies. Where did you get synopsis from? This mom is right on target about exclusively breastfed babies will suffer hypoglycemia, hypothermia, and subsequent other issues if not properly fed. I am a seasoned NICU nurse and I am a true advocate for breastfeeding all the way, but there is NOTHING wrong with supplementing an infant along with breastfeeding until the mother’s milk comes in. First time mothers need to not feel pressured to breastfeed because they are scared, tired, and definitely not in the mood for education on the subject. I agree that education on breastfeeding versus formula feeding should start with the first OB/GYN visit and continue from there. While most facilities are initiating Baby Friendly, I feel that Fed is Best should be given along with the other educational handouts and allow the mom to make her own choices and not condemn her for either one. Being exclusively breastfed may protect the infant from infections and childhood diseases, but I have seen just as many infections, colds, and other nasty little infections in breastfed babies as in formula babies. “This mom circulating this letter” is not only a seasoned physician, she is a mom and has experienced these issues, so I believe her first hand living trumps your alleged research all day.

I think mothers should leave the hospital/birth center with the knowledge (and printed instructions) of what dehydration – insufficient intake looks like. There are several easy to spot indications. They should be able to identify a swallow in the baby.
They should be reassured that nursing every 1-2 hours is NORMAL for a newborn. They should be encouraged to use skin to skin/kangaroo care frequently for the first several days/weeks.
Babies should be evaluated either in the clinic or home at 48-72 hours and more frequently if there is an indication of dehydration.
As a lactation consultant, I see way too many mothers that did not receive sufficient support or information before leaving the birth facility.
More of our hospitals need to become designated as Baby-Friendly – so the physicians and nurses have better education and training on lactation.

sadly, better breastfeeding education actually increases the risks of complications to babies because breastfeeding classes and books completely hide these common brain-threatening complications and literally lie to mothers about insufficient milk being rare. 44% of first time moms develop delayed lactogenesis II and 22% of all healthy moms develop it. DLII can disable an exclusively breastfed child for life. It is not more breastfeeding education that will protect babies. It is truthful breastfeeding education that does.

I also agree that the calculations are way off. Does the author really think that if all women exclusively breastfed, only one in 1000 babies would go hungry? So breastfeeding failure is only .1%?
I thought that breastfeeding advocates put the number at 5% (personally I think that it is more like 10%).

Most of the studies cited by Dr Steube were of all babies. Many women may have supplemented before the baby would have become dehydrated. And many women decide to formula feed in the first place.

Below are a few mores studies:

http://fn.bmj.com/content/early/2013/07/12/archdischild-2013-303898.extract
..”Prospective studies with full lactation support consistently show that approximately 15% of exclusively breastfed infants develop excessive weight loss, exceeding 10% of birth weight, within the first week of life.1 Approximately one-third of these infants will be hypernatraemic (sodium ≥150 mEq/L).”

http://www.ncbi.nlm.nih.gov/pubmed/26545661 2105
“..excessive weight loss was present in 18.8% (74/393) of the newborns.
breastfeeding problems are common. These difficulties are significantly associated with an increased occurrence of excessive neonatal weight loss. ”

Here is another study where 200 women were followed and given full lactation support:http://www.ncbi.nlm.nih.gov/pubmed/12949292 “Excess weight loss occurred in 12% of infants and was associated with primiparity, long duration of labor, use of labor medications (in multiparas), and infant status at birth.”

Here is another study where 200 women were followed and given full lactation support:http://www.ncbi.nlm.nih.gov/pubmed/12949292 “Excess weight loss occurred in 12% of infants and was associated with primiparity, long duration of labor, use of labor medications (in multiparas), and infant status at birth.”

Below is another study on early supplementation:http://www.ncbi.nlm.nih.gov/pubmed/26918700
2016 Limited Amount of Formula May Facilitate Breastfeeding:….
“The study shows that controlled limited formula use does not have an adverse effect on rates of breastfeeding in the short and long term..”

Dr. Steube, I notice that you display your own credentials prominently, but you disrespectfully ignored Dr. Christie del Castillo-Heygi’s credentials, referring to her as “the mother.” Dr. Castillo-Heygi is a practicing emergency room physician with degrees from Brown and UCSF medical school.

It is not surprising that mothers claim that their concerns are ignored or dismissed out of hand by lactation consultants and physicians when they can’t even be bothered to credit their professional colleagues who speak out about their personal breastfeeding difficulties.

Kudos to Dr. del Castillo-Heygi for forcing you to admit the truth, that breastfeeding is NOT best for every baby or every mother.

I usually love your writing Dr. Steube, so I was surprised not to see a link to the story you were referencing. The cynical part of me wonders if there was a reason for that. The reader should have access to it so they can draw their own conclusions.

I have become internet friends with Dr. del Castillo-Heygi and have sought her advice on Autism, as a child I love struggles with it (not to my knowledge from the same cause as Kai). Kai will have profound brain damage for the rest of his life, which the lactation consultants who saw him and his pediatrician bear responsibility for. Attempts by the LC community to downplay our responsibility for events like this are sickening. Hypernatremic dehydration should be a sentinel, or never-ever, event for a newborn baby. We need to take a good hard look at our attitudes towards babies who are approaching 10% weight loss and show symptoms of inconsolable hunger or severe lethargy in the first four days.

While exclusive breastfeeding is ideal, we cannot sacrifice some babies’ brains to increase exclusive breastfeeding rates.

I could not agree more with your statement — we cannot sacrifice some babies’s brains to increase exclusive breastfeeding rates. And I thank you for sharing the link to the details of Dr. del Castillo-Hegyi’s story. My intention in writing the blog was not to dissect the details of her experience, but to consider the systems issues that we must address in order to ensure optimal nutrition for each baby.

I’m struck, in reading the details of her story, by these sentences:

“My son was born 8 pounds and 11 ounces and had lost 1 pound 5 ounces at day 3 of life, about 15% from birth weight. At the time, we were not aware of and were not told the percentage lost, and having been up all night long trying to feed a hungry baby, we were too exhausted to figure out that this was an incredible amount of weight loss. Our pediatrician told us that we had the option of either feeding formula or waiting for my milk to come in at day 4 or 5 of life.”

These sentences imply that the pediatrician was aware that the infant was 15% below birth weight, and did not assess feeding, recommend supplementation or arrange immediate evaluation by a lactation consultant – mother and baby were not seen for a feeding assessment until the next day.

Dr. del Castillo-Hegyi’s account suggests that physician and health care provider education regarding the seriousness of a 15% weight loss on day 3 of life is urgently needed to ensure that cases such as this one do not occur. As one physician commented in a Facebook discussion, “The systems issue that bothers me is that there is no other area of infant medical care that staff is so poorly and inconsistently trained in (if trained at all).”

Mothers and infants deserve to receive care from providers who can manage breastfeeding with the same professionalism and expertise that we manage hypertension or diabetes. Unfortunately, in too many medical schools and residency programs, management of breastfeeding is not taught, and mothers and babies suffer the consequences.

Table 5: Recommendations on Breastfeeding management for Healthy Term Infants

All breastfeeding newborn infants should be seen by a pediatrician at 3 to 5 d of age, which is within 48 to 72 h after discharge from the hospital
• Evaluate hydration (elimination patterns)
• Evaluate body wt gain (body wt loss no more than 7% from birth and no further wt loss by day 5: assess feeding and consider more frequent follow-up)
• Discuss maternal/infant issues
• Observe feeding

Text: Although weight loss in the range of 8–10% may be within normal limits, if all else is going well and the physical exam is normal, it is an indication for careful assessment and possible breastfeeding assistance.

I noticed that to. It’s sad that we all as seasoned professionals cannot find common ground for the health of these little angels and their moms. Thank you Dr. Castillo-Heygi for allowing us to enter your private life for the sake of your Angel Landon called Home. God Bless you and your family.

(quote from blog post) “If we go with the estimate that 1 in 1000 babies develop an elevated sodium level, we would have to supplement 1000 healthy kids to avert one case of hypernatremia. If we use the UK numbers for severe hypernatremia, we’re looking at 100,000/7, or 14,285 healthy babies being supplemented, to prevent one affected baby”

Again, I really don’t understand the meaning of this…. That very few babies (one in 1000, and maybe only one in 14,000) need any more than breast milk?.

Maybe only this few get to the point of brain damage, but that’s because they are being supplemented don’t you think? If only one in 1000 women supplemented, don’t you think that we would have a lot more children suffering severe effects of dehydration?

If I am reading this wrong, please do not hesitate to correct me. ,

Statements like this seem to confirm the notion that virtually every woman can exclusively breastfeed provided they stick it out long enough. A bottle of formula, when it is needed, really isn’t going to have much in the way of bad effects—-It’s basically just feeding a hungry baby—
Which can be good for the whole family, physically as well as mentally.

Hi Anne – I think it’s a matter of context. In the paragraph immediately before that sentence, I wrote, “What, then, of the tragic stories of brain-damaged babies? Wouldn’t it be easier to supplement all babies, rather than redesign our systems of care to identify dyads at risk and ensure early follow-up for every baby?” In response to this rhetorical question, I write in the next paragraph, “It’s here that we have to think about numbers needed to treat, and numbers needed to harm. If we go with the estimate that 1 in 1000 babies develop an elevated sodium level, we would have to supplement 1000 healthy kids to avert one case of hypernatremia.”

Rather than supplement all babies, I’m suggesting that we systematically identify mother-baby dyads at risk, and provide the with support. Earlier in the post, I cite a study showing that 19% of primiparous women who breastfeed have an infant who experiences >10% weight loss, with delayed onset of lactogenesis. Some of these babies will need to be supplemented — whether with hand-expressed colostrum, with expressed milk from mom, with donor milk, or with formula. There are pros and cons of each of these options, and moms and providers need to be able to discuss those choices and make a decision that is optimal for that particular family — for the physical and mental health of all involved, as you note above.

But that statement suggests that only 1 in 1000 baby needs supplementation. That is a gross underestimate when even the ABM’s jaundice protocol states that 10-18% of babies experience starvation jaundice from insufficient milk intake. That means 1 in 10 to 1 in 5 babies need supplementation. You know very well that the need for supplementation is much higher than that. Then there are babies who are born hypoglycemic, EBF babies who are found hypoglycemic 10% of the time and 23% of the time if they are a first-born child, not to mention all the other sick babies who need supplementation because they are not well enough breastfeed. That is a much rate than 1 in 1000. We need to stop perpetuating the frank lie that only a rare baby needs supplementation because that lie injures he brains of many babies. Let’s also stop pretending that my child’s neurological disability was not caused by profound hypoglycemia, hypernatremic dehydration, hyperbilirubinemia. The data makes that certain. It was the lack of feeding that caused his disability, not the formula. Formula saves his life. This story should also tell us that by the time a baby reaches 15%, the damage is done, even if we were told to supplement. What would have saved his brain is if the breastfeeding establishment told mothers it was possible for this to happen and that a crying inconsolable child is in distress asking for more milk and is going to become hypoglycemia if they don’t get milk now. That is what would save 100% of Babies for getting brain-injured. Respecting a mother’s and babies’ right to feed and a baby’s rights to be fed when they are TELLING YOU they need milk.

Keep in mind that not every baby whose mother isn’t making enough milk will become dehydrated. I see a number of babies who have borderline weight loss or slow weight gain, who clearly aren’t getting all the milk they need to grow, who are still having adequate pees. (One of my excellent LC mentors emphasized that this is why we need to teach parents to focus on poops more than pees – they are easier for parents to see and size, and more accurately identify the babies who are getting enough to stay hydrated but not to grow.) If we’re asking specifically about severe dehydration, fewer babies will experience that.

Their percent weight loss and number of diapers cannot adequately measure whether they are fuel depleted. In fact, the only study on the correlation of diaper counts to milk intake found there was no correlation between the two for the first three days of life. They only correlate by the fourth when a mother’s milk comes in. A baby can produce the expected number of diapers without receiving a drop of milk from the fluid and stool they are born with. After the period of antidiuresis (or low output of urine in the first two days) which the kidneys use to adapt to the low intake of fluid, in order to maintain homeostasis or electrolyte balance, they MUST urinate or else the electrolyte abnormalities can kill. My child produced wet diapers through the third day at least. By the fourth, he likely dropped off but we started supplementing after our LC visit. A baby who is crying inconsolably is hypoglycemic or about to be hypoglycemic. Unfortunately, once that period has past, they can look quiet or sleepy because they are in fact encephalopathic from hypoglycemia and are conserving energy. A full 24 hours of hypoglycemia would have devastating effects on a newborn brain. I would estimate my child experienced 48 hours of hypoglycemia because it is impossible to not develop hypoglycemia after 48 hours of no milk intake. Other babies unfortunately can be born with little reserve at birth because of prolonged labor, placental insufficiency and other stressors during birth. Their birth weights do not indicate the point at which they have ideal physiology and therefore no one can predict at what weight loss they will have run out. In the series of 11 children, one child suffered 0 weight loss and experienced hypoglycemic brain injury to almost the entire brain. Which means hypoglycemia alone can result in brain injury even if a child has lost no weight. Therefore, many children will benefit from supplementation to keep them from experiencing hypoglycemia and the brain injury it causes because the exclusive colostrum-feeding does not meet a child’s metabolic demand and does not ensure survival of brain cells. As it stands if a mother produced 5 mL per feed per the ABM guidelines which contains 3 Calories and she fed 12 times in 24 hours, a 3 kg child would receive 36 Calories while their full metabolic need is 300 Calories. That is the reason why EBF babies are high risk for hypoglycemia (<40) which occurs to 10% of EBF baby's and 23% of first-born EBF babies in the first 48 hours. That level of injury has been demonstrated to result in brain injury on MRI and lower developmental scores at 18 months. What is more important to a mother? That her child is safe from brain injury or is exclusively breastfed? I know what my answer is. I know what most mothers' answers are.

“In the series of 11 children, one child suffered 0 weight loss and experienced hypoglycemic brain injury to almost the entire brain. Which means hypoglycemia alone can result in brain injury even if a child has lost no weight. Therefore, many children will benefit from supplementation to keep them from experiencing hypoglycemia and the brain injury it causes because the exclusive colostrum-feeding does not meet a child’s metabolic demand and does not ensure survival of brain cells.”

I am puzzled by the inclusion/conclusion of babies in that case series who lost weight well within the range of normal <7%, including the baby who lost no weight (almost unheard of in exclusively breastfed babies in the US) It seems like some of these babies were, in fact, being fed according to the guidelines you recommend in your letter (supplemented with pumped milk and/or formula), even with weight loss below the 7% threshold. It's hard to see with *some* of these cases that they are attributable to insufficient feeding. I think it's fair to ask if these babies had an underlying vulnerability predisposing them to hypoglycemia/brain injury; this is not to say that we should not try to identify and protect the most vulnerable, but rather that if there is a small subset of babies who will develop hypoglycemia even from borderline feeding, do we truly supplement all babies from birth? It doesn't look like that's your recommendation.

"No mother is told to supplement her child for inconsolable crying, which is what nature has designed that cry for."

We absolutely do tell mothers who have risk factors for delayed lactogenesis (symptoms of IGT, history of low milk production, etc.) to supplement for inconsolable crying. But nearly all babies will fuss and cluster feed on the second night after birth; we encourage those moms who are healthy, and whose babies are healthy and doing well on all other markers, to continue breastfeeding, with continued monitoring. It's a fine line to walk when a mother is convinced her child is "too hungry", but he is audibly gulping at the breast, is otherwise healthy and well, mom can easily hand express large drops of colostrum, and she is frustrated that he wants to be held to sleep instead of sleeping in the crib. I feel secure, at this point, in reassuring her that there are no medical indications to supplement him but it is her right as his mother to supplement if she wants to. One person's "inconsolable" baby is not another's.

Rebecca, it means that the whole premise of the birth weight being some magical number that denotes perfect physiology from where we can fast a baby for three days without harm is wrong. Babies can be born hypoglycemic which means they need supplementation immediately even if they are a healthy term baby. Labor is stressful to babies too. There is nothing wrong with the baby. They have survived one of the most dangerous things we do, which is being born. To say that there was something wrong with a baby who needed more milk than we have deemed as normal is ridiculous. We can feed EVERY baby their need with formula if they in fact don’t have the reserve that we previously thought they had. It means that every exclusively breastfed child is at risk for hypoglycemic brain injury because colostrum does not meet their full caloric need. . Is it possible that the people who thought up of the story that exclusive breastfeeding was responsible for the propagation of our species were wrong and that non-exclusive breastfeeding, including wet nursing and pre-lacteal feeding was actually what allowed our species to survive? Perhaps the reason why none do the people in breastfeeding research can find a single culture in the world that exclusively breastfeeds for 6 months without needing to turn to alternative sources of milk Is because that is not how we fed babies ever? Maybe because breastfeeding as we know it was invented by a bunch of suburban American moms who had forgotten what it was like to starve to death and for babies to starve to death that they had no idea that these pre-lacteal feeds that they were shaking their fingers at were actually advantageous and allowed a baby’s brain and body to survive the pre-lactogenesis II period. It means we are wrong about exclusive breastfeeding. It is NOT best for every baby and for every mom. In fact for as many as 22% of babies, it can be deadly. Those babies would have been fully functional if they had been feed fully from the moment they were born. We give newborns a tenth to a third of their caloric need and watch them lose weight and cluster feed for survival and ask why are they becoming brain injured? You are all apparently resistant to correction by science if you can watching thousands of babies get hospitalized by your protocols every year that would have been avoided had they been fed formula and still think there was something wrong with the baby for being unable to withstand three days of fasting? A drop of colostrum is all they need? 5 mL of colostrum provides 3 Calories and a 3 Kg needs 300 Calories a day to live. If a mom feeds 12 times, that will give a newborn 36 Calories. Do the math. I know none of you ever have done it because you couldn’t be bothered with math. We make babies fast for days and that is why they are losing weight and then we tell mothers their inconsolable crying is not hunger. It is disgusting.

I’m puzzled because you yourself, in your petition, make multiple references to using birth weight as a threshold to begin (at-home?) supplementation, but (I think) here you’re saying it’s unreliable, and all babies should be supplemented from the moment of birth regardless of weight loss as a precaution. That’s why I asked more about using birth weight, given your citation of those case studies. Like Dr Stuebe and the other providers who have posted here, the last thing I want to see is babies being harmed by under-feeding. Defining what under-feeding is, where we cross the risk threshold, and how to prevent it is crucially important. (This is true even for formula-fed babies. I have seen copiously formula-fed newborns who could not keep their glucose consistently above 45 despite multiple re-feeds and re-checks – what should we be doing for them? They seem part of this subset of vulnerable babies who even with clearly adequate feeds have unstable blood glucose.) It seems like birth weight plays a role in that conversation, but I’m unclear on what role you feel it plays.

I don’t expect us to create a protocol in the comments section! I’m just trying to get a sense, reading through the research you link to, of how it helps us create a roadmap for what to look more closely at.

The most current research on EBF babies shows that 10% are hypoglycemic at a level than can reduce long-term intelligence and cause brain injury visible on MRI. First-born EBF babies are even higher risk at 23%. Those babies are at risk of life long disability if not fed adequately. The first step is to fully inform mothers that EBF’ing is associated with hypoglycemia that can cause life-long disability if not corrected. The next step is to tell mothers that hypoglycemia can be corrected or avoided with supplementation because the caloric content of colostrum if a mother is producing the average 5 ML per feed is inadequate to correct hypoglycemia. Supplemented babies are not subjected to the risks of disability from hypoglycemia because they have free access to calories and can self-regulate. Some mothers may have their milk in. If they have a full supply that in fact satisfies a baby, those mothers can in fact EBF from birth. That is a minority. For the rest of the babies, they fall into the high-risk for hypoglycemia category similar to SGA, LGA, infant of GDM and preterm babies. The incidence of hypoglycemia in those groups are in the low teens. EBF babies are the same range. They deserve as frequent monitoring for hypoglycemia as the current risk group and supplementation to correct for it as well. The majority of the hypoglycemia occurred in the first 24 hours. So no, not all babies have to be supplemented but if we are to protect all babies, the new data says they need frequent glucose checks. Now weight loss cut-off only predicts development of renal failure and hypernatremia which occur at 7%. 7% should be hard supplementation cut-off for the protection of the baby. Freely fed babies lose no greater than 7%. Which means that is their maximum physiologic tolerance for weight loss. So the two combined, glucose monitoring and correction as well as supplementation at 7% to prevent excessive total body fluid loss AND an inconsolable hungry child who is losing weight and crying even after nursing deserve to be supplemented. The last one is the most important because that child deserves a say. They have a right to request more milk if there isn’t enough at the breast. They are the only ones who know when they have lost too much weight and are about to be hypoglycemic. Finally, any mother who wishes to supplement from birth should be supported. Supplementation after nursing in the pre-lactogenesis II period is in fact the safest option to keep a baby from developing hypoglycemic brain injury while maintaining the stimulation for milk production. That is a valid choice for any mother but I do not support FORCING mothers to choose only one option, which has been the standard of breastfeeding education up to this point. I support informed decisions. If a mother wants to exclusively breastfeed with the risks involved including jaundice, hypoglycemia and hypernatremic brain injury, in order to maintain her EBF status, she should be fully informed. But a mother who wishes to protect her child from starvation and does not want her child to lose more than they will with free access to milk is making a valid choice to protect her child from complications that are adequately documented to be related to colostrum-only feeding.

Thank you for an interesting and timely read. As a manager of the lactation department in a hospital deliverying 4000+ babies per year I am most interested in the amount of support many of these cases received and how full lactation support is defined across the nation. Few hospitals have programs that provide the number of IBCLC FTEs recommended by AWHONN and the United States Lactation Consultant Association. Please copy and paste the link here for more information: http://uslca.org/wp-content/uploads/2013/02/IBCLC_Staffing_Recommendations_July_2010.pdf.

Thanks for this Alison, and I agree with all that you say. Except that I have my doubts that it was just four days of ineffective feeding that resulted in Meagan’s boy’s neurodevelopment problems. (I haven’t yet unearthed the story of Christie’s child, just scanned the cases below.) In every case like this there are and will be compounding factors. How else could we explain those babies in the 1981 Mexican earthquake who were dug out after a week and who celebrated their first birthdays at a party held by UNICEF who assessed them for any signs of damage due to their week of starvation and found no problems? And the clues to what else happened to this child are there in Meagan’s post. He struggled to tolerate any formula and in the end would take ONLY ready-to-feed Alimentum, which as a liquid end-sterilised concentrate was most likely to contain high levels of AGEs and could have had many other problems, like high mineral levels more common in concentrates when people (rarely) do independent assays. (And too easily fed over-concentrated as well.) I am not aware of any association between autism and jaundice; I am aware of associations between artificial feeding and autism. Of course, it might be that low intakes for a few days made this baby’s gut more sensitive to infant formula, so that early starvation was responsible for the intolerance. But I know of many children who cannot tolerate infant formula who were perfectly well in their first weeks on the breast. It might equally be that very high calorie/high protein formula was prescribed to hurry catch up growth, and the high mineral and amino acid levels were toxic. Or that other factors altogether combined to accentuate in utero damage which explained the poor feeding initially. Everyone is quick to blame breastfeeding and talk of starvation and assume that altering the gut microbiome with doses of formula is safe, when that may be the worst thing we can do for some children. Forty years ago some kindly souls did that for my hungry son, and he suffers the consequences still. Those few doses altered his life in very unhelpful ways, and mine as well. And I am not alone in that, or my first book on infant allergy would not have sold 25,000 copies over the years and led to so much relief for so many families.

I would love you to go back and really analyse this case with all of that in mind, and see whether you would still summarise this as “exclusively breastfed baby who suffered brain damage after 4 days of ineffective feeding”: accurate description, but misleading perhaps? I have seen appalling images of really severe malnutrition in African babies: in the TALC slide set, for example, there is a before and after image of a child who looked skeletal, a wizened creature, at the breast and months later was an alert cheerful butterball with (they said) no problems. So I think that we do need to get all the details before assuming that a few days low intake is such a issue.

What’s more, Western medicine simply has lost the plot when anyone can graduate as a healthworker not knowing the most basic danger signs for infants, signs taught to every healthworker in poor communities, even in community programs to children who caretake younger children. Thanks heavens lactation consultants see this as basic knowledge. All parents should taught such things. The gross negligence lies in sending women home with babies, no support, and too little knowledge. And it happens everywhere.

I don’t know that all lactation consultants ARE are trained to look for dehydration. I have read many , many blogs and accounts of women who were under their care whose babies became dehydrated.

And honestly, the biome of EBF babies is less diverse than combo-fed babies (1). Most studies do not find that breastfeeding can prevent allergies/asthma/eczema…. And some studies find more atopic conditions in breastfed babies than in those fed the bottle(2).

When I was young (1960’s) most babies were formula fed, and fed solids quite early. Asthma was much less prevalent, and food allergies were very rare, Do you suppose the ‘pure’ gut (nothing but breastmilk for 6 months) may be a little over-rated?

This is taken from a 2007 AHRQ Report on breastfeeding
“It should also be noted that the fourth study, which did not qualify for inclusion in our new meta-analyses, reported an increase in asthma risk with increased duration of breastfeeding in those subjects with a maternal history of asthma.

http://pediatrics.aappublications.org/content/121/1/183.full
“In summary, at the present time, it is not possible to conclude that exclusive breastfeeding protects young infants who are at risk of atopic disease from developing asthma in the long term (>6 years of age), and it may even have a detrimental effect.

Anne, I don’t have time to deal with each of these at length, but after spending five years writing a book that covers this whole area, can I suggest that you read it and comment after doing so? Two quick points: 1. greater biodiversity that includes more pathogens and fewer commensals is not a good thing: what matters is which bugs are present and what they do, how they interact, and we are only just beginning to get research about the 700 and counting recently found in breastmilk, while comparative studies of infant formula by brand are still lacking despite compositional differences which suggest that there should be significant differences between formulas; studies of experimental ones designed to improve the industry-acknowledged defective formula-fed gut microbiome do not reflect what has been happening over decades. My book argues that a milk hypothesis makes a lot more sense and has a more substantial scientific basis than the commonly accepted hygiene hypothesis or the biodiversity hypothesis, both of which are discussed. And 2. allergy studies to date have not looked for the intergenerational impacts of artificial feeding, which become very evident when you deal with these families as I have for decades, and can be explained by epigenetics. We are what our grandmothers ate: many first generation formula feeders gestated in bodies that were breastfed probably did better than second and third generation formula-exposed babies gestated in the bodies of women formula-fed as children (even if those women EBF). I have lived through both the 1960-1970s formula invasion (when every child in many hospitals was formula-exposed and most women breastfed for very short periods) and the allergy epidemic in Australia, which has grown with every generation for reasons both genetic and epigenetic. Don’t reject the ideas before you read the evidence in the book, which has convinced some pretty eminent researchers to date. http://www.infantfeedingmatters.com to learn more.

Maureen, it is physiologically impossible for those Mexican earthquake babies to not have suffered brain injury. I hear that example from people in the LC field and no one with any training in medicine or physiology would come to the conclusion that babies can survive 7 days of starvation and not be brain injured. The article is very clear that brain damage was present by day 3 of life. The science of hypoglycemic brain injury tells us thousands of brain cells suffer massive necrotic brain cell death with minutes of hypoglycemia. Furthermore 1 year olds can exhibit few signs of brain injury because they may not talk yet and all the developmental milestones that can become delayed or not arrive has not yet occurred. My son looked normal at one year of age.

Thank you for engaging in this dialog, I find these new studies on the gut biomes quite interesting, and it is nice to communicate with others who have looked into it as well. I will try and read your book.

Your eugenics theory is interesting, So you are saying that —allergies from formula will not show up until generation 3? I was formula fed and so were my children (they had some breastmilk–but I had problems and bailed early) and we are all allergy free.
So are you saying that it really doesn’t matter if my daughter breastfeeds her baby or not–her children will be at a greater risk from allergies, because we were both fed formula?

This might be right, but it might be hard to prove. As I said, I will try and read your book.

And thank you Dr Castillo-hegyi, for bringing attention to this issue. I agree with everything you have written and have signed your petition.

Where can we buy your book the in the US?
My children are first generation bf in three generations and all of them are affected by allergies, severe GI distress and autism. I exclusively bf them all, still am nursing the baby but my supply was never an issue. I’m extremely interested in eugenics though, we have seen signs of ASD since birth in all the kids and worked hard to eliminate environment triggers with each child from pre conception through pregnancy, birth and now in daily life.

Please have a look at the FIB Foundation facebook/internet site. I worry that there are so many inaccuracies that it is tantamount to scaremongering. I have no medical qualifications at all, but I have breastfed 3 children and have some awareness of the problems encountered by new mums. I find the FIB page based upon a personal experience and non-applicable to most normal healthy new mums and babies, yet it is something that many will use to “educate” themselves.. Is there anyone that can regulate this?

I was in fact seen by a lactation consultant at day 1, 2 and 4 of life. I was also seen by a pediatrician every day of those 4 days. Even if my son had been supplemented at 15% on day 3, it would have been too late. He had been disabled by breastfeeding exclusively. He was likely hypoglycemic for a full 24 hours by that time because he had stopped crying from lack of fuel. You left out the study by Moritz in 2005 that showed a hypernatremia admission rate of 1.9% or 1 in 50. You know for a fact that the admission rate is higher than 1 in 1000 with more mothers attempting to exclusively breastfeed and they are higher at BFHI institutions because of their restrictive supplementation policies.

Here’s the link to the petition with the video presentation for anyone who wishes to hear my side, all the data I collected and the comments from the parents, nurses and doctors who have witnessed this every day tragedy.

The lactation consultant you saw… What credentials did they hold? I see many people who call themselves LCs but are not IBCLCs. I wonder if you had access to competent care or were you provided someone who had inimal instruction on what to actually look for when it comes to trouble.

Why on earth would your pediatrician not alert you to the severity of your child’s situation?? That is reprehensible to see a baby with such a severe weight loss and not realize there is a MAJOR problem!

Did you take a breastfeeding class? If so, what info did you receive that you felt was harmful ? Helpful? Omitted – other than the obvious statement that EBF can cause x,y,z health issues.

Lastly, but definitely not least, I am so sorry for your experience and for the complications your son has experienced. It is truly tragic. I find most of the medical professionals I’ve worked within private practice have minimal info about what to expect, yet their care providers assume, incorrectly, that they need less instruction then the layperson because they ate in the healthcare field. Do you belieethis was a factor in your care (or lack thereof)?

I am pretty certain she was an IBCLC. I was a physician in the hospital and they gave me care like I was. And of course I not only read the LLLI manual but also attended the breastfeeding classes. What is harmful about breastfeeding education is hiding from mothers about how often breastmilk is enough and how often babies starve and become hospitalized from exclusive breastfeeding. One of the largest BFHI systems with a 90-97% EBF’ing rate at discharge just published raw data on their phototherapy hospitalization rate and it was 10.1% of all babies born. Over 10,000 babies out of over 100,000 babies born. The majority of those cases are from starvation jaundice since a prevalence study shows that 86% of hyperbilrubinemia is non-hemolytic. Furthermore, even hemolytic jaundice is exacerbated by exclusive breastfeeding before sufficient milk production. That is reprehensible. That number of hospitalizations that are almost entirely preventable with a bottle should drive women far away from BFHI hospitals. Do you have any idea of how many NICU nurses and neonatologists think the BFHI is completely unsafe? I guess if you are not taught there are any consequences to letting a baby starve from exclusive breastfeeding, you don’t realize how many babies you are actually harming for breastfeeding. I’m sure Nestle thought the same thing when news started leaking in about how many babies were dying from contaminated water made to use their formula. Severe hyperbilrubinemia (>20 mg/dL) occurs to an estimated 1.1 millions babies worldwide annually according to the latest article, the majority in the developing world where they don’t have resources to resuscitate babies back from starvation. It carries a 50% mortality in many parts of the world. It looks like we have victimized third world babies all over again.

[…] she called me yesterday and talked to me for an hour. I needed that. She called after reading an article I sent her about how delayed milk can cause dehydration and brain damage for the newborn. I […]

What the petition asks for is for truthful imparting of information on the risk of insufficient milk intake and that it can lead to irreversible devastating brain injury. This is not a scare tactic or a push to dissuade mothers from breastfeeding. This is called patient’s rights, which is not negotiable. It is a call for respecting the rights of patients to know the risks involved with their decisions. The risk of brain injury from EBF in the first days of life cannot be minimized by reassurance about how “rare” it is and “it won’t happen to you.” Every patient is informed of the risks no matter how rare especially if it can disable their child for the rest of their life. This is not a rare event. I know 40 mothers among my circle of friends and colleagues whose kids suffered from breastfeeding malnutrition, found unresponsive at home, had failure to thrive, found to not be receiving any milk for days, jaundiced and starving for weeks and told not to supplement and all of them have life-long neurological disabilities. Many doctors and nurses among them. We need to stop defining success in infant feeding as exclusive breastfeeding or breastfeeding at all costs. We need to define success as feeding all children what they need where not a single one is harmed with hospitalization, starvation or brain injury. And let’s stop pretending that the complications associated with EBF in the first days of life are rare. They happen every day. Any general pediatrician and neonatologist can tell you that. Let’s also stop pretending that these cases occur to mothers who are least educated about breastfeeding. Mothers who are least educated about it use common sense and just give a bottle. The highest risk babies are the ones whose mothers are the MOST educated in breastfeeding because they are brainwashed into believing that formula is dangerous. Little do they know that it is in fact starving that is dangerous, not formula.

Nicely done Alison. Being a primary care Pediatrician , a Breastfeeding Medicine Specialist and working in academics thus spending a lot of time educating folks all over the country as well as locally I do see this as a real problem and as Alison said, there is no one size fits all approach. What I feel is MOST important is to see EVERY baby 1-3 days after discharge from the hospital, no matter what. 1 day out if high risk, 2-3 days at most if not. Seeing these babies , recognizing when a baby is not getting enough milk for whatever reason and the judicious use of supplementation whether it be expressed mother’s milk or donor milk in addition to breastfeeding , or formula ( as a “medicine”) if there is simply not enough milk to sustain this baby is of utmost importance. Often if you catch these babies quickly you can prevent the dire consequences described in this case that sparked this blog. You just have to see the babies and be proactive with interventions depending on each situation. Usually it can not hurt to start pumping early to increase mom’s supply and stimulate perhaps her delay in lactogenesis. Most times extra milk from expression can do the trick. You simply can not wait till her milk eventually comes in because it may not fully as I have seen time and time again, especially with moms with preexisting conditions like infertility, Gestational Diabetes, advanced maternal age, multiple births, premature births etc. Or the baby is so depressed from dehydration that he can not effectively nurse. Being lethargic from lack of milk parents often confuse with being ” milk drunk” as so well described in the lay literature. Doctors,LCs, and other health care professionals need to see them to recognize the difference and help these families out. It is the lack of close follow up and not responding appropriately to a baby with significant weight loss ( > 10% by the ABM is a red flag, see our protocols) that causes problems. 15% is a big weight loss. Major interventions should have been done, not the wait and see approach. The AAP and the ABM all preach to see all babies 1-3 days for f/u after being discharged from the hospital. This should be more emphasized and reinforced. Many breastfeeding tragedies could be avoided.

Amy E Evans,MD,FAAP,FABM
Board Member of the ABM, Director for the Center for Breastfeeding Medicine at CRMC and Attending Pediatrician at Peachwood Pediatrics
Fresno,CA

The complication rate from exclusive breastfeeding is much higher than stated in this article. The rates of hypoglycemia in EBF neonates is 10% and even higher at 23% for first-born newborns. The distinction between symptomatic and asymptomatic as the difference between malignant and benign is a logical fallacy as the physical exam of a newborn is not accurate enough to detect the brain cell death that is occurring. For instance, one of the more severe consequences of hypoglycemia is a left MCA territory infarct, which affects language. Because a child cannot talk, one would never know that child infected their brain. Therefore, waiting for a child to become symptomatic, as in lethargic means you have waited for the brain to experience near-complete glucose deprivation. As you can see by the MRI findings of those babies, massive injury was present by the time they were “symptomatic.” Those babies by being fed colostrum alone were being fed a tenth to a third of their caloric requirement, therefore they were experiencing necrotic cell death long before they were symptomatic. Having witnessed the phenomenon myself, by the third day of life, my child was crying inconsolably, which was a sign of pending hypoglycemia. He did this for hours that day until he couldn’t. No mother is told to supplement her child for inconsolable crying, which is what nature has designed that cry for. The negligence is not just not telling me to supplement at 15%. My child’s brain had infarcted by then. The negligence is telling mothers to not give formula and not giving them a supplementation plan. The negligence is not telling mothers their child could be starved from EBF and become disabled from it, which you continue to promote every single day. You hide the complications to coerce mothers to EBF because you do not want them to believe there is a choice. By that, you put 22% of babies’ lives on the line whose mothers will have delayed lactogenesis II. That is where the negligence occurred.

Furthermore, referring to formula as medicine that can only be prescribed by doctors is a distortion of reality that breastfeeding organizations teach mothers, which cause them to starve their children and ignore signs of danger. Formula is food. So is breast milk. It is just food. For a starving breastfed child, formula saves lives. If our pediatrician hadn’t sent us home with a sample of formula, my child would have become apneic on the way to the hospital. That “formula is medicine” statement is despicable and endangers millions of children around the world.

Wait a minute! “Many” breastfeeding tragedies could be prevented? There is absolutely no excuse for ANY breastfeeding tragedies to occur, Dr. Evans. In addition, I am deeply concerned about referring formula as “medicine.” Formula is the perfect nutritional food for any baby who needs to use it. I have countless babies who can not thrive on human milk.

This quote is from Mariane R. Neifert, MD

“The fear that saying anything negative about breastfeeding will have an adverse effect on promotion efforts contributes to a conspiracy of silence about breastfeeding failures that impedes an understanding of the problem.”

Everyone following this thread, please read the updated campaign letter that includes the most recent articles written about the subject of newborn starvation from insufficient breastfeeding. It includes an article about 11 breastfed babies who suffered hypoglycemic brain injury and long-term disabilities. It includes a more complete account of my son’s story and an expanded recommendation list to protect newborns from starvation and brain injury.

“less than 100% can exclusively breastfeed”. Less than 78% can exclusively breastfeed because 22% of women have delayed lactogenesis. Other women can experience insufficient breast milk within the 6 months provided. Please stop with the lies.

Being a first-time mother
Having a long and difficult labor
Having a c-section with little or no labor
Being over 30 years old
Having postpartum hemorrhage.

The risk of PPH can be reduced, but hospitals are already doing that, because hospitals generally prefer that patients not bleed to death.

The others either can’t really be modified, like being a first-time mother, or can’t be modified without creating other risks, like c-section when necessary. And, these risk factors are super common! No matter what you do or don’t do, a substantial percentage of mothers are going to have delayed lactogenesis, and the rational thing to do is to watch out for it. When it strikes, show the parents how to supplement well enough to protect baby’s health, and encourage them to keep trying to breastfeed at least 8 times per day.

Bottom line, delayed lactogenesis doesn’t have to be a barrier to long-term breastfeeding success, and it certainly shouldn’t threaten baby’s health.

I support supplementing with breastfeeding. I’m not an idiot. I can see how much I’m pumping compared to what my child needs. You want to exclusively breast feed? Better set up a pump next to that hospital bed to make sure you ARE producing and that it’s ENOUGH. Don’t be stupid and let the very thing you are trying to do for your child, harm them. I happily nursed and supplemented by baby girl for 6 months-nothing wrong with that!

I have been a breastfeeding mother long enough to know that if the milk is not coming out of the breast after let-down has occurred it is simply not there. People in lactation literary want us to believe magical thoughts like “there is milk there, you just can’t see it!” and your baby who is nursing non-stop, losing weight and who is getting invisible or barely present milk is NOT actually hungry. Those are among the many lies of breastfeeding education that lead mothers to harm and hospitalize their own newborns.

The original poster was referring to setting up a pump next to a hospital bed, presumably in the first few days postpartum. A pump is really not a good indication of how much a baby can transfer in the first couple of days, as anyone who has helped NICU moms pump can attest. I have worked with a lot of NICU moms who have been diligently pumping and not getting a drop, and are very discouraged. We begin hand expressing and all of a sudden the colostrum begins to flow to the point where they’re able to provide all their baby needs. I agree there are times when the pump is a good gauge of production, but depending on the pump to indicate milk production in the first few days postpartum would be a mistake.

This is a fantastic write-up. I think we have encouraged everyone that Breast is Best and to exclusively breastfeed, but we are only now starting to accompany that encouragement with actual support and education in the medical setting. Still so many pediatricians, daycare providers, and postpartum nurses are referring to standards and guidelines intended for formula fed babies. It makes it so difficult for new mothers to sift through the information that is available to determine reliable and well-informed sources. We are asking mothers to breastfeed, but we have not put nearly enough work into preparing them to be successful. Maternal health and wellness needs a serious overhaul.

I find the argument of “my baby is brain damaged due to insufficient intake” to be problematic and alarmist – there’s never discussion of – was there immediate clamping of the cord? Pitocin? Narcotics? Epidural? Meconium indicating hypoxic events? There’s no way to tell if brain damage or brain development was to blame for the poor intake and lactogenesis delay or the other way around. **And Dr Amy fans be advised that there is an active investigation into hate mail sent to my personal snail mail box and all hateful comments directed at me will be forwarded**

Did they teach about hypoglycemic brain injury or bilirubin encephalopathy in lactation school or do they not cover that? Are you not aware of documented brain injury caused by hypernatremic dehydration from exclusive breastfeeding or is that not taught? IBCLCs have no training in pediatrics or neonatal brain injury. I suggest you have a better grasp of the science and medicine of newborn brain injury before questioning what it says.

IBCLCs are trained to recognise risk factors for insufficient supply, to evaluate transfer, and in fact do have some training on neonatal neurology and the risk of injury due to insufficient feeding.

IBCLCs are not doctors, HOWEVER, IBCLCs are to be working in tandem with physicians. It is well outside my SOP to evaluate for brain injury – that is within the SOP of the physician. I refer and defer to them.

Unfortunately, hospitals frequently have nurses who receive anythihg from an 8 hour to 40 hour class in breastfeeding and do not have the training needed to properly evaluate a feeding. I cannot tell you how much poor and inadequate information that has been presented to a mother in hospital by someone who supposedly was a “lactation consultant” or “lactation specialist.” Frequently these are the same people who provide the classes, and thus the poor information starts before birth. You yourself stated in a previous post you were “pretty certain” the person you saw was an IBCLC – but if you, as a well educated physician were not 100% clear as to who you were seeing and their level of expertise, how can the average mom be sure she’s getting qualified, accurate, evidence based advice?

Additionally, and I’m sure you will agree given your experience, physicians are woefully trained in lactation. I find mothers refered to me with their 6th baby (or more) who show CLEAR indication of IGT yet their OB who has done breast exams on them for the last 15 years has never mentioned or noted the breast abnormalities. I find many doctors who are completely clueles as to what constituted normal feeding patterns, who still encourage night weaning by 3 months, who encourage scheduled feeds, who are unaware that a propler oral evaluation ought to be given at birth, who are unaware that an oral tether does indeed impact transfer… I could go on and on.

I frequently see your comments lashing out at the ‘lactation community’ as a whole – lumping IBCLCs in with every other designation that exists. That’s kind of like saying ‘medical people’ and making no distinction between a Med Tech and an MD. It’s an unfair generalization. While I’ve certainly not seen all your posts, but in those I have seen, I never have read you call out your pediatrician for neglect of his/her duties. A 15% weight loss and NO instruction??? I may not have the same education as an MD, but I can guarantee you if I do a weight check on a newborn and find that weight loss, I’m sending them straight to the doc, and if they don’t have one, straight to the hospital. I am confident any other IBCLC would do the same – why do I not see outrage at the pediatrician, but only at the ‘lactation community?’

Please have a look at the FIB Foundation facebook/internet site. I worry that there are so many inaccuracies that it is tantamount to scaremongering. I have no medical qualifications at all, but I have breastfed 3 children and have some awareness of the problems encountered by new mums. I find the FIB page based upon a personal experience and non-applicable to most normal healthy new mums and babies, yet it is something that many will use to “educate” themselves.. Is there anyone that can regulate this?

What about the Hep B vaccine? I see this as a potential ponfounding factor also. Circumcision? Studies suggest that babies who are circumcised in the first few days do not breastfeed as well. Could this also be a factor? How can it be suggested that 25% of babies will be harmed my exclusive breastfeeding? How do other babies survive in cultures where EBF is the norm? And in 6 years of talking to mothers and studying birth and breastfeeding, I have never personally spoken to a mother with these severe issues so I’m really suspect of these numbers of babies that are supposedly being harmed.

I read through both articles. I will say I was determined to ebf and when my sons pediatrician told me on day 3 that he lost too much weight and I need to supplement, I was really upset and didnt want to. I didn’t know about these risks and I also didn’t know that there were options for supplementation besides formula in a bottle. I ended up speaking to and seeing a midwife who taught my birthing class and said if any of us had problems nursing to call her. After the pediatrician we went over to her. She saw that my milk hadn’t come in yet, that while my son had lost more weight then standard, it wasn’t that much lower (if I remember correctly it was about an ounce). She saw that he was hungry even after nursing (duh my milk hadn’t come in yet). So she made me, and taught me to use, an SNS (supplemental nursing system). After about 2-3 days, my milk finally came in and I no longer needed the SNS and our nursing relationship continued for 2.5 years. I do wish (and think it would be a benefit for other new moms) to have been informed about the risks that could have happened if I had chosen not to supplement. As a new mom and someone who was very researched on ebf vs formula, I was devastated when I had to give him formula. I think if we educate moms (and doctors) on the risk factors to look out for and we give moms other options beside just formula in a bottle (i.e. An SNS system and/or donor breast milk in a bottle), it might help a mother who had her heart set on ebf. Of course all mothers want what’s best for their child but with all the breast is best campaign it makes it hard during those difficult first days to really identify if baby needs something more. In essence, I think proper education is really key to helping prevent this tragedy.

I think it should be required in all hospitals and birth centers to teach all breastfeeding mothers to hand express after the very first feeding and instruct them to hand express after every feeding while in the hospital. I believe this could help to decrease the delay of lactogenesis II, ensure that the baby is receieving milk even if transfer at breast isn’t yet adequate, and recognize insufficient milk supply. We should all rally together instead of creating this divide, and find ways to implement practices such as routine hand expression so that we can protect breastfeeding while also protecting babies from devastating consequences.

As I stated earlier in this thread, while I am a true advocate for exclusively breastfeeding, the “one size fits all” is not the correct approach for initiating baby friendly. I believe that we should adapt the “one size fits most” theory. While the education given to mothers from the first OB visit to after birthing is totally advocating EBF, I believe that the MOTHER SHOULD HAVE THE CHOICE of how she would like to feed her baby. We are told to educated and re-educate if a mother wants to formula feed, well number one, I’m NOT going to argue with a mom on feedings, and number two, the more frustrated she gets, the more frustrated the baby gets and then we have a lose/lose situation. As it stands now, facilities are going to Baby Friendly because a couple of the major insurance companies have given them timelines stating that they will not reimburse for births occurring at a non-Baby Friendly hospital. I do not think they should be allowed to put such rules into place and dictate to the consumer when and where they will pay for a commonplace occurrence such as birthing! We are implementing BF at the facility I am working at and let me tell you, it is an absolute nightmare!!!!! In order to successfully transition, there needs to be lots of support for the breastfeeding mother in house, not us nurses who have had only a few hours computer training on breastfeeding, but a licensed lactation consultant in house 24/7. This consultant needs to round on these moms every single day and night because problems occur at ALL hours. There needs to be support after discharge day and night for these issues as well. Just because you want to go total BF, doesn’t mean that the world needs to stop! There are facilities that are making moms sign affidavits to formula feed their babies!!! There are facilities that keep formula in the Pyxis!!! There are facilities that want the director/admin called if a mom decides at 2am she can’t breastfeed anymore!!! What??? All I’m saying is that yes, let’s proactively rally for 100% breastfeeding moms, but let’s also have the same momentum for the formula fed babies as well.

[…] principals of medicine. Furthermore, breastfeeding complications are typically dismissed by breastfeeding advocacy organizations as rare, inconsequential or a problem with education, technique or support, all of which could be solved […]